My father is still in hospital - seven weeks, double pneumonia, two subsequent chest infections but now recovering nicely. I didn't realise at first that he was being treated differently, I just thought he wasn't getting very good care which I fought against all the time, which is why I am there every day, trying to do everything that isn't done to ensure that he can get better, but, when you get to know the stories of others on the same wards, you see just how differently people are treated, blantantly, when they don't have dementia. I just didn't expect it as you have faith in proper treatment when you have a disease, especially one you have played no part in getting.
Then I saw his medical notes, not the general file kept at the end of the bed but the other file that all the medical stuff is written in - always try and see that one if you can, you will be surprised at what is in it that you are not told. My father's showed that someone, who obviously knew nothing at all about dementia, had written "end stage dementia" on his notes - he is early stage six which has a span of approx. two and a half years, followed by stage seven which can be five to seven years so he is not end stage by any means, and underneath his consultant had written 'patient's daughter reports he was walking and talking before fall that led to admission - this will need to be verified'! He was a heart specialist so he knew nothing about dementia either and being that older breed of arrogant doctor, didn't ask anyone, let alone me, whether that assessment was right or, as it turned out, very wrong indeed. If I had been asked or known this had been written earlier, I could have brought in the carers daily reports or something from a back assessment I'd had done on the day he fell where he needed the loo when the assessor was there so I showed her how I move Daddy and he walked the 82 feet to the loo and back and she'd talked to him, but I didn't see it until the neglectful damage to him had been done.
This statement led to my father not being given very good care at the beginning; he had double pneumonia but wasn't bringing up any phlegm and when I asked about an expectorant, his consultant said they didn't work, and it's not like you can really argue with them can you? So, the phlegm laid there and infection number two set in and then, weakened, so did number three but he is on the mend now, and the only need for him to remain in hospital is the feeding issue.
I posted a while ago about the PEG issue but here is the thing - there is a massive, life or death situation going on with the PEG that I don't know if anyone else knows about, or can explain to me. My father cannot swallow very much - only when the circumstances are right and he wants to - and will this euphemistically called 'comfort feeding' be enough, realistically to sustain him, or am I going to bring him home to simply starve to death in front of me, with no support, no palliative care because he isn't actually terminal?
I get that there is a point where people cannot physically recover and are sent home to die in a familiar place or are put in the quiet side rooms in the wards to die and everything but pain relied is withdrawn but my father is sitting out in a chair for hours, singing, speaking clearly, responding to the doctor, responding to the nurses and, no longer on any medication apart from what he has at home so he is recovering not dying so why is he not having the help that everyone else seems to be entitled to, as long as they don't have dementia? Yesterday, having pulled yet another NG tube out (even with 'boxing gloves' - tinker that he is!), he was able to have a couple of hours before the new tube was inserted, without the gloves, with his hands not anchored by the bedclothes and without me stopping his hands being anywhere near his face as I have to do normally as I like him have a break from the gloves when I am there but I have to watch him like a hawk. I didnt think of what he would do, but, instinctively, he started to wave his arms around, quite high in the air, gently, and then began to explore his face, his nose, his chin, his teeth, his hair, and to rub his hands together. When you think about it, it makes perfect sense that he would feel disconnected from his body after so long not being able to touch it, but to know instinctively that he needed to explore and reconnect was amazing to me and wonderful to watch. He is still in there and coming back to us, all he needs is the help and time to do it.
The GMC guidelines are that someone who is not in imminent, forseeable danger of death within hours or days must be given nourishment and fluids to sustain them if it will be of benefit to them. What possible explanation can there be, can even be put forward to support a otherwise healthy man being denied food and liquids simply to bring about his death?
Okay, so a PEG is offered to people who have lost their ability to swallow through illness, stroke, accident etc. - a man on the same ward as my Dad, same age, stroke, recurring chest infections and the same (different from before) consultant as my Dad, but he doesn't have dementia - okay, not surprised at this by now but I can't see the difference - can anyone else? If you lost the ability to swallow when food is in your mouth i.e. that you recognise the sensation that tells you food is there, and what to do with it which is precise movements of the tongue to form the food into a lump and push it to the back of your mouth and then swallow, that doesn't mean that you have lost your reflex swallow which is automatic. So, if you have lost one and not the other, what difference does it make what has caused the loss of the 'choice' swallow? If the reflexive swallow is intact, then everyone who has that is surely at the same risk of aspiration pneumonia, there is no difference then that I can see between the risks for a stroke patient who has lost their 'choice' swallow but has their 'reflex' swallow and a dementia patient who has, apart from the fact that one will be offered the PEG routinely, and my father, who is otherwise healthy - maybe 60% of what he was, and hasn't been allowed to even try to walk since admission, and no physio. no matter how much I beg - but well in himself certainly well enough to come home right now, will, conceivably be sent home to die unless he can survive and pick up with risk feeding within a week as that is how long realistically someone can survive without fluids.
And how awful is it that I will have to do this - he dies if I don't feed him, and if he aspirates food when I do, I kill him. I don't think he or anyone should be treated this way. As I said before, he didn't bring this upon himself in any way - he didn't ruin his liver with alcohol abuse, he hasn't eaten himself into morbid obesity and hasn't smoked and developed lung cancer because of it, he simply has something going on in his head that he didn't cause. He should be treated with the same respect and honesty and genuine care as everyone else and yet he has been and is being treated so shabbily - I don't know how to bear it.
Then I saw his medical notes, not the general file kept at the end of the bed but the other file that all the medical stuff is written in - always try and see that one if you can, you will be surprised at what is in it that you are not told. My father's showed that someone, who obviously knew nothing at all about dementia, had written "end stage dementia" on his notes - he is early stage six which has a span of approx. two and a half years, followed by stage seven which can be five to seven years so he is not end stage by any means, and underneath his consultant had written 'patient's daughter reports he was walking and talking before fall that led to admission - this will need to be verified'! He was a heart specialist so he knew nothing about dementia either and being that older breed of arrogant doctor, didn't ask anyone, let alone me, whether that assessment was right or, as it turned out, very wrong indeed. If I had been asked or known this had been written earlier, I could have brought in the carers daily reports or something from a back assessment I'd had done on the day he fell where he needed the loo when the assessor was there so I showed her how I move Daddy and he walked the 82 feet to the loo and back and she'd talked to him, but I didn't see it until the neglectful damage to him had been done.
This statement led to my father not being given very good care at the beginning; he had double pneumonia but wasn't bringing up any phlegm and when I asked about an expectorant, his consultant said they didn't work, and it's not like you can really argue with them can you? So, the phlegm laid there and infection number two set in and then, weakened, so did number three but he is on the mend now, and the only need for him to remain in hospital is the feeding issue.
I posted a while ago about the PEG issue but here is the thing - there is a massive, life or death situation going on with the PEG that I don't know if anyone else knows about, or can explain to me. My father cannot swallow very much - only when the circumstances are right and he wants to - and will this euphemistically called 'comfort feeding' be enough, realistically to sustain him, or am I going to bring him home to simply starve to death in front of me, with no support, no palliative care because he isn't actually terminal?
I get that there is a point where people cannot physically recover and are sent home to die in a familiar place or are put in the quiet side rooms in the wards to die and everything but pain relied is withdrawn but my father is sitting out in a chair for hours, singing, speaking clearly, responding to the doctor, responding to the nurses and, no longer on any medication apart from what he has at home so he is recovering not dying so why is he not having the help that everyone else seems to be entitled to, as long as they don't have dementia? Yesterday, having pulled yet another NG tube out (even with 'boxing gloves' - tinker that he is!), he was able to have a couple of hours before the new tube was inserted, without the gloves, with his hands not anchored by the bedclothes and without me stopping his hands being anywhere near his face as I have to do normally as I like him have a break from the gloves when I am there but I have to watch him like a hawk. I didnt think of what he would do, but, instinctively, he started to wave his arms around, quite high in the air, gently, and then began to explore his face, his nose, his chin, his teeth, his hair, and to rub his hands together. When you think about it, it makes perfect sense that he would feel disconnected from his body after so long not being able to touch it, but to know instinctively that he needed to explore and reconnect was amazing to me and wonderful to watch. He is still in there and coming back to us, all he needs is the help and time to do it.
The GMC guidelines are that someone who is not in imminent, forseeable danger of death within hours or days must be given nourishment and fluids to sustain them if it will be of benefit to them. What possible explanation can there be, can even be put forward to support a otherwise healthy man being denied food and liquids simply to bring about his death?
Okay, so a PEG is offered to people who have lost their ability to swallow through illness, stroke, accident etc. - a man on the same ward as my Dad, same age, stroke, recurring chest infections and the same (different from before) consultant as my Dad, but he doesn't have dementia - okay, not surprised at this by now but I can't see the difference - can anyone else? If you lost the ability to swallow when food is in your mouth i.e. that you recognise the sensation that tells you food is there, and what to do with it which is precise movements of the tongue to form the food into a lump and push it to the back of your mouth and then swallow, that doesn't mean that you have lost your reflex swallow which is automatic. So, if you have lost one and not the other, what difference does it make what has caused the loss of the 'choice' swallow? If the reflexive swallow is intact, then everyone who has that is surely at the same risk of aspiration pneumonia, there is no difference then that I can see between the risks for a stroke patient who has lost their 'choice' swallow but has their 'reflex' swallow and a dementia patient who has, apart from the fact that one will be offered the PEG routinely, and my father, who is otherwise healthy - maybe 60% of what he was, and hasn't been allowed to even try to walk since admission, and no physio. no matter how much I beg - but well in himself certainly well enough to come home right now, will, conceivably be sent home to die unless he can survive and pick up with risk feeding within a week as that is how long realistically someone can survive without fluids.
And how awful is it that I will have to do this - he dies if I don't feed him, and if he aspirates food when I do, I kill him. I don't think he or anyone should be treated this way. As I said before, he didn't bring this upon himself in any way - he didn't ruin his liver with alcohol abuse, he hasn't eaten himself into morbid obesity and hasn't smoked and developed lung cancer because of it, he simply has something going on in his head that he didn't cause. He should be treated with the same respect and honesty and genuine care as everyone else and yet he has been and is being treated so shabbily - I don't know how to bear it.
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